Mayo Clinic Connect
I have been diagnosed with this and I’m in pain most days and would like to have discussions.
Liked by Mamacita, Volunteer Mentor
Should I start taking plaquenil that has been prescribed by my doctor for inflamation caused by sjrogens syndrome I am very nervous of all the side effects of this medication especially possible loss of vision.
Is there anybody out there that has taken or is now on this med?
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hi, going out on a limb here, so work with me, ok. Having myself just gone through an emotional awakening a few years back and spending the last 10 years learning about how /i have left psychologists puzzled by my success.
So, here it is for you to run around in your head. What does the brain do when a person is out in the freezing cold? The brain has a back up plan for every possible situation that might shut it down, in other words its a survivor. Now the brain shuts off circulation to the limbs. Right?
I believe with all mind and body illnesses the brain is the one behind it all. Just imagine your brain getting a signal telling it, the eyes are never outside, so they fail to need to produce moisture, like they would if they were outside all the time.
Take Alzheimer for could it be the brain is realizing the person is using pictures to remember people, push one button on a phone and a call is made, and so much more, so the brain realizing it can be a little more effencient by shuting down part of the brain used for memory. don’t need memory working so hard when there are tools to use.
Thus, use the medication, but, don’t depend on entirely. spend more time outside or at a floral shop. find things to that will tell the brain need to work here, need moisture. Too the medication might work even better by being in places you normally be go. goodluck
Use glasses…the Jackie O type if your outside and it is breezy/windy…really helps cut down on the drying effects of the blowing air…also inside if near a air handeling unit. I have been using a honey based drop as the others also have scarey side affects longterm. So far so good. Helps to stay really hydrated. Drink lots of water and other fluids., down side is alot of bathroom visits, but I notice a big difference if I don’t. I am trying my best not to use DMARS and so far so good.
How severe is your Sjogrens? Some times it pays to slow down and not just react to a “diagnosis”. Now that you know what “it” is research on line, get a second opinion..investigate alternative remedies, the more we know the better choices we can make for ourselves. We are fortunate to have access to medications, but they often come at a price or create other health issues….as side effects. But make informed choices and good luck.
A friend of mine has parkinson, I told him some day the cure for this will be thinking a certain way, carrying out some kind of activity and this will cure the desease. We fully don’t understand the power of the brain, so we adapt to the condition by using something. Are we better off today then we were 1000 years ago.
Throughout my life I didn’t have the higher level of thinking to help with problems, so, they went away and I got better. Imagine had my parents known just how severe my mental state was as a child.
Over the last ten years I have met people with mental disability at my age in the 40s and still the same as they were as a child. When I sit down with the group to share my life. they are sit back, one guy very upset and walks out only to turn around tp say “you are your own best doctor.” These people didn’t need medication, they needed exposure to the environment outside to experience life as a child with scaped knees, a sting by an ant, climbing trees, playing in the rain, doing things a kid gets to do before they realize how it looks from another persons view.
When people turn to alternative preventions or aids to help them cope with life, they are failing to make the brain work in ways unknown to docotrs, psychologist and others in the professional field.
I often wonder what illnesses are in other countires where there isn’t a Walgreens to go fill a presciption to treat a condition. Are people asctually so lost that even after hearing the side effects associated with taking the pill, all they can think is my condtion will go away. How can a person take on side effects so severe life maybe at risk only to get rid of one condtion to be faced with another one.
Please don’t take this the wrong way. Due to a work injury I have a very bad shoulder which is very painful, very painful when putting pressure on it. While my wife and were making love, it was hurting severelly, I almost stopped, until I focused completely on what we were doing. The pain went away.
With my migraines triggered by my work, I pour 100% of my focus into my work applying all off my five senses to fully concentrate on my activity. I haven’t had a severe attack in 8 years, then I had to go into a dark room, very quite and relax until my my medcation started to work.
Lets look at my dog who I will have to give away. Do you know what happens if I give her a bath everyday. You should look it up. Its not good for the dog and I didn”t have to look it up to see what happens when she goes without a bath for a week.
Where we live other people fail to care for there dogs. when I take her for a walk she comes back in scratching, I wash her and fleas just come pouring off of her. So, I will have to find her a home.
I do not take or use anything, /I have chosen to study my problem and allow my five senses and creative skill to work as they did when I was a child, its much like not having a mind. Like that of a one year old.
Do you know how destructive the mind is to people living with problems? People at birth and the first couple of years had more conflicts, challenges and problems then any adult. The mind screws it up by taking over the five senses, the mind(thinking) steps in to create it own values and principles on the things the five senses are experiencing.
Had I a mind growing up I wouldn’t be sitting here sharing with you things I have learn over the last 50 years. Let me share with you something on the brain, the brain doesn’t know right from wrong, up from down or hot from cold, it hasn’t changed since day one, birth.
It gives you what you think about he most. A few months back I tried something to see what would happen. I work on farms in the middle of the night running tractors, I watched the movie Jeepers Creepers, then I went to work, I did this everyday. While at work in the middle of the field with corn fields around me and a full moon in the sky, I would turn off all my lights get outside my tractor to wait for him to come. I next started to look around to see what thigns would look like him. Usning my imagination I put a lot of effort to seeing things to scre me into believing something is there.
After a three weeks of doing this, it became boring, I got back to focusing on work. Only my brain wasn’t done, it continued to make look at something by sending me an impluse to look at things that didn’t look right.
Learn how to use the mind in the right way and the impluses coming from the brain will feed the mind with good things. Now I have to undo this which has become a problem. Which it is almost gone.
You know the reason a diet(do I eat today) never works? I just shared with you the answer. When a person consumes there mental activity with what and how and where and the thinking is related to food. The brain is going to continue to send impluses trying to help the mind eat better.
I don’t know about you? But, when I’m hungry and somebody starts talking about food or I get an impluse about food and sometimes I smell something which isn’t there. I have to eat. The problem is the brain needs to relax and to do this the mind has to relax. People need to make something the “Hghlight” of the day. Do you sit at work going through the morning thinking about what you are going to have for lunch or do you brain a lunch and still look forward to kunch time. Either way you have made it a point to the brain that food is the “highlight” in your life.
The power of the brain lies within the ability to not think.
Liked by tstewartsd
Ah, the perverbal secret, not thinking. The mastering of the mind…not to think,to turn it off/turn it on. But that takes thinking in and of it self! Because we are human.
It is all so connected and disjointed at the same time. Physical injury does affect the body and “it” remembers…albet, the mind, as all is one. Toss the aging process in there and…well like I said we are human.
Is one any different than the other? No, I don’t believe so…
Perhaps looking and finding the the beauty in our everyday abundance. sincere simplicity…zen-ish…quantam physics… pick your favorite, or your poision, it is all a choice, concious or uncouncious…the mind doesn’t ever stop “functioning”.
So it may help if the mind is used to project for the day…by helping someone else, caring for the dog…making that concious effort. Thinking and carrying out, exploring a subject completely new….Rejoicing in simple abundance, it channels the mind and helps in all aspects. It all helps to bring us to the same destination. Good Luck.
Three things have to take place in order for this kind of mental activity to work, when doing anything or involved in anything by yourself or with somebody else, 1. you have to keep an open mind to allow the five senses to take in information, 2. you have to be patient to allow for something to develope, 3. Now you can think.
With over 36 years of work experience with over 40 businesses in four states and working in a think tank, I can freely say, “it is very difficult for a person to hold back from thinking first and everything else comes last.” Another problem is people have to assume things without having all the information needed to make a decision or be creative.
When you were born there was no mind to help you think. If, you had a mind you would have made decisions in ways which would have slowed down your learning ability.
Autism I believe is the result of when the mind begins to take over the open minded or no thinking and confusion developes from it. There isn’t a smooth transition, for a child to think on a too high of a level can create brain failure much the same way the brain saves us from experienceing severe pain.
When I watched my grandchildren grow up, they proved my theory to be correct. Let five senses work first, take in all informaion, be patient,let it come, then think or act on it.
when I was 41 there needed to be a change in my life. There wasn’t an ability to feel or have feeling for anybody or anything which was a conditon /i was born with and a near drowing made it worse.
What helped me to find my feeling which has puzzled psychologists in different fields of practice was “how did you get feeling and emotions to start working?” There were many things I did, two things !.the open minded part 1., 2. and 3. combined with helping anybody in need of attention, service or care.
Before getting feeling emotion I had to study what just happened and then I would responde in a way according to what just happened. The problem with this is my wife, children and people felt I didn’t care. I cared, there just wasn’t the ability to back it up with a feeling or emotion.
I know the importance of money, yet, I have no emotional connection to it.
So, psychologists can’t explain how a part of the brain which has never worked is now working. 1.open mind-free from thinking, 2. be patient allow time to pass for everything to fall into place, 3. think about it with positive thoughts. A person can’t go through a day walkng around like a Zombie or a Buddist Monk. That is failure for people like me, failure is doing nothing. I’m 50 and feel like a teenager because I find everything fasinationg, even conflicts, challenges and problems I welcome, yes even negative minded people who can only assume all things are the way they see it.
Life is fun when looked at through the eyes of a child. To defy age means to not live a life of repetitive activities. The Best to you.
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes, dry mouth, sores in mouth that might be related to my lichen planus , joint pain all over, ear ache,.not sure if ear has any relationship. Recently a dr prescribed plaquenel will be on that soon.
CMTG – there are many members here on Connect who are on or have been prescribed plaquenil. Simply put “plaquenil” in the search bar and you’ll find them all. There are at least 2 threads about it too.
– Mycophenolate mofetil with Plaquenil http://mayocl.in/2avQVdd
– Plaquenil eye problems http://mayocl.in/2bsC7M0
Sorry to hear that.
Sjogren’s is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto’s Thyroiditis?
Overview might be of help:
Liked by Gem
Plaquenil is usually a pretty safe drug to take but if you notice any major changes, report them.
Sjogren’s has been known to cause ear issues. Its a systemic illness so it could technically cause or exacerbate a lot of things.
There are more details around but here’s a high level overview.
Hope this helps.
I was diagnosed with a salivary gland lip biopsy about 10 years ago. I take cervimeline for my sjogren’s. Also use biotene toothpaste, mouth wash and mouth spray. Keep water with me constantly. I also have RA. Was on plaquenil for a long time and it helped, but then it started affecting my eye sight. Be sure to have an eye exam to look for damage every six months if you take the plaquenil. I no longer take it. But it is rare to have the eye sight side affect. Praying all goes well with you.
I’ve had nausea this week wondering if this is from sjogrens or Tylenol I take for my ear ache.
Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.
Hi, and welcome.
So you did not have positive anti-SSA or anti-SSB and were diagnosed based on a positive ANA and subjective dryness? Here are the current diagnostic criteria:
According to the American-European classification system (as modified by Tzioufas and Voulgarelis ), diagnosis of primary Sjögren syndrome requires at least four of the criteria listed below; in addition, either criterion number 5 or criterion number 6 must be included. Sjögren syndrome can be diagnosed in patients who have no sicca symptoms if three of the four objective criteria are fulfilled. The criteria are as follows:
Ocular symptoms – Dry eyes for more than 3 months, foreign-body sensation, use of tear substitutes more than 3 times daily
Oral symptoms – Feeling of dry mouth, recurrently swollen salivary glands, frequent use of liquids to aid swallowing
Ocular signs – Schirmer test performed without anesthesia (< 5 mm in 5 min), positive vital dye staining results
Oral signs - Abnormal salivary scintigraphy findings, abnormal parotid sialography findings, abnormal sialometry findings (unstimulated salivary flow < 1.5 mL in 15 min)
Positive minor salivary gland biopsy findings
Positive anti–SSA or anti–SSB antibody results
Little surprising that they would start you on plaquenil without all of the diagnostic criteria being met so wondering what they must have seen. Not saying they’re wrong, just as I said, surprised. I have it and my lip biopsy was negative so I had to meet other criteria, one of which was a high titer anti-SSA along with some IGG abnormalities which I don’t understand well enough the try and explain. There can be a lot of reasons for a positive ANA.
Never heard of a strong association between nausea and Sjogren’s but GI symptoms aren’t unusual.
Any thyroid disease? Common comorbidity with Sjogren’s.
The good news is that plaquenil is the right stuff and that its usually easy to tolerate.
I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.
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